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Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping cancer patients from all over the world face life-threatening challenges.

CANCER SURVIVOR ROBERT TRUJILLO

With his family history of cancer, Robert Trujillo didn’t hesitate to visit his doctor when he felt a lump on the right side of his jaw. He was ultimately diagnosed with squamous carcinoma in November 2016.

After not being able to locate the tumor, doctors had to perform an exploratory surgery and located the tumor under Robert’s tongue. The original treatment plan for Robert was to first remove his tonsils and then begin radiation. Yet, Robert remembered how his siblings were able to overcome their cancers with the help of The University of Texas MD Anderson Cancer Center. Once he consulted with doctors at MD Anderson, they explained that removing his tonsils at his age would not be wise. Instead they recommended proton therapy for his head and neck cancer, because it would precisely target the tumor while sparing nearby tissue such as the salivary glands. Also, patients with a head and neck cancer have fewer side effects such as loss of taste, dry mouth, fatigue or hair loss compared to traditional radiation. Coincidentally, Robert’s son worked at MD Anderson so relocating to Houston from Fort Worth wasn’t difficult. Robert arrived at the center in January 2017 where he completed a total of 33 treatments. With cancer behind him, the retired highway patrol employee is now back to enjoying life. “I have learned that material things don’t matter. It’s about enjoying life,” Robert said. “Life is sweet.”

Evie Hughes, a 6-year-old girl from Nefyn in North Wales, has been having proton therapy treatment at a Florida hospital since early April to treat a brain tumor.

Evie was diagnosed with a brain tumor after her teacher noticed something was wrong with her eyesight and her parents took her to the optician. To their horror they were told their daughter needed hospital treatment and doctors later found the issue was the result of a brain tumor, which left her permanently blind in one eye. Evie was rushed to Alder Hey Children’s Hospital in Liverpool last October, where she underwent emergency surgery. The initial surgery went well but medics said Evie would have to travel to Florida for additional proton therapy treatment. An online crowd-funding appeal was launched to help make the ordeal less stressful for the rest of the family. Evie’s mom said that American doctors were happy with the treatment Evie received in Florida, but won’t be able to say for certain if the proton therapy has been successful for another six months. “She’s due to visit Alder Hey next week for a check up and there will be regular visits for the next few months,” her mom said.

When he was diagnosed with prostate cancer, 67-year-old Thomas Allison defied his doctors’ advice and flew to Prague for £30,000 proton beam therapy. He is glad he went with his guts, as he is now disease free.

The retired farmer, from South Lanarkshire in Scotland, was diagnosed with prostate cancer when he was 64. “It all started after a barbecue with some neighbours,” Thomas recalls. “I had a few beers and I needed to go for a wee but nothing was happening and it got really painful. So I went to A&E and by the time I got there I was screaming. Doctors told me there was a chance I had cancer and it was confirmed with a biopsy a few days later.” Thomas has already gone through years of hormone therapy but at this stage of the disease, doctor told him he would need radiotherapy. After reading about the potential side effects, Thomas searched the Internet for treatment alternatives and found out about proton therapy: “I’d done a lot of my own investigations on the Internet about different treatments for cancer and I wasn’t sure if I wanted to have radiotherapy. Because of where the prostate is situated, close to the bladder and bowels, you can get a number of side effects and one is going to the toilet a lot, or even incontinence. I said I didn’t want to spend the rest of my life on the toilet and I was looking at going for proton beam therapy. The doctor told me I didn’t need to do that and the conventional radiotherapy offered by the NHS was just as good.” But Thomas had made up his mind to try the Proton Therapy Centre in Prague. He stayed in Prague for over a month with his wife flying out at weekends to visit. It cost him £30,000 but he has no regrets as he has now been declared cancer free.

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping cancer patients retake control over their lives.

A FAMILY’S CANCER BATTLE

Gemma Edgar and 3-year-old Noah, a mom and son from Colchester in the UK who have both battled cancer, performed ribbon cutting at new ‘Vision Express at Tesco’ as representatives of the Childhood Eye Cancer Trust (CHECT).

Gemma was diagnosed with a malignant brain tumor in October 2014, just 8 weeks after the birth of her second son, Noah. She had emergency surgery the next day, followed by weeks of radiotherapy. A year later, Noah was diagnosed with retinoblastoma, a rare and aggressive form of eye cancer affecting babies and children aged under six. He needed surgery to remove his right eye, to save his life, followed by 6 months of intense chemotherapy. He then spent 9 weeks in the USA having proton beam therapy. Noah now wears an artificial eye and has regular MRI scans and examinations under general anaesthetic every four months to check that the cancer hasn’t returned. “Despite his struggles, Noah is now doing really well and is a happy, energetic 3-year-old boy,” said Gemma. “He doesn’t let the fact that he only has one eye stop him at all.” Unfortunately, Gemma’s tumor has regrown and despite currently undergoing treatment, she has just run the London Marathon to raise money for CHECT. She added: “Whenever I’m feeling sorry for myself, I think of Noah and the fact he was only a baby when he underwent treatment and he never complained.” Vision Express has enjoyed an award-winning partnership with the charity since 2010, using initiatives to raise awareness of retinoblastoma and drive donations for the charity, so they can help more families affected. It was also the first optician in the UK to roll out a protocol to ensure a quick and effective referral if retinoblastoma is suspected.

Mitch Lewis, a 55-year old state trooper from Kotzebue in the US, flew 4350 miles from his home to Prague, Czech Republic for proton beam therapy after he was diagnosed with prostate cancer when he was 52.

Mitch, who featured on the TV show ‘Alaska State Troopers’, has a family history of prostate cancer and his grandfather died of the disease. So when his PSA level began to soar, he knew it was time to take action. “I went for a digital exam and they felt an anomaly. Long story short, they found I had cancer with a Gleason score of 7.” Mitch’s options were a surgical prostatectomy, which would mean removing the prostate, or photon treatment. “I figured out pretty quickly that I was not going to have surgery. I came into contact with a man who had and he had been left with incontinence and had to wear a catheter. His sexual function had gone.” As proton beam therapy wasn’t covered on his insurance, Mitch called five different centers in the US to enquire. Each center said treatment would cost between $180,000 and $230,000. Mitch began to research cancer care overseas and he finally landed on the Proton Therapy Center in Prague, the capital of the Czech Republic. “From the start, it was a wonderful experience, and I say that with hindsight. The treatment I got surpassed anything I’ve ever received anywhere in the world,” he said. Mitch received 5 ‘fractions’ of treatment over the course of 2 weeks. When he wasn’t being treated, the father enjoyed seeing the sights. He says the experience has now ‘changed his life’ for the better.

Back in 2016, at age 11, Kelly finished 6 rounds of proton therapy. The ringing of the chimes marked a significant milestone, as he was one of the first to complete treatment at the Proton Therapy Center at Cincinnati Children’s.

Kelly’s medical journey began 6 months prior with the diagnosis of a brain tumor that was causing a buildup of fluid in his brain. He would undergo major surgery followed by six rounds of chemotherapy. Because of the location of the brain tumor, he became an ideal candidate for proton therapy as the next step. Kelly faced each radiation treatment with a thumbs up. When it came time for the actual treatment, he had to be flat on his back and very still while the proton therapy took place. Fast forward almost two years, Kelly unveils a new look but still has the same upbeat attitude for life. “Considering I was one of the first to do this for Children’s, it felt pretty cool, like discovering new frontier like Lewis and Clark’s trip to the West,” he said. He returns to Cincinnati Children’s for follow up tests every three months to make sure his tumor hasn’t returned. Kelly hopes he can help pave the way for children facing a similar path. “I hope they learn to love people, love parents and love life. Honestly, it kind of almost helps you. It helps you understand that life is precious,” he said.

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is giving patients from all over the world the opportunity to reach their full potential.

RAISING FUNDS FOR LITTLE JOSEPHINE

When 2-year-old Josephine Seymour suddenly started being sick last November, her parents thought the toddler just had a stomach bug, but the reality was much worse.

Josephine was diagnosed with an aggressive brain tumor after 4 weeks of relentless vomiting in November last year. She was tested for everything from gastritis to constipation and a urinary infection but doctors could not find the source of her illness. Her parents were told their daughter needed an MRI after her sickness persisted. Three days before Christmas scans revealed Josephine had an orange-sized brain tumor called anaplastic ependymoma, a rare type of tumor that is more common in children. She underwent a 7-hour operation on 29 December but only 85% of the tumor could be removed. The rest, which had formed around critical neurovascular structures made up of nerves, vascular veins, lymph vessels and arteries, would need to be removed using radiation treatment. But radiation comes with added risks because of Josephine’s age and growing brain, so her parents Andrew and Penny researched alternative options and discovered proton therapy that targets only the tumor and spares surrounding healthy tissue. They now hope to raise £88,000 to take Josephine to a specialist proton therapy center in Essen, Germany. They have already raised nearly half their target after starting a Go Fund Me page a month ago. “Most of our donations have come from strangers. We’ve been amazed by people’s generosity,” Andrew said.

Paul John Stanbery is a composer and the conductor of the Butler Philharmonic. For him, getting to Carnegie Hall, the most famous concert venue in New York, has involved more than just practice. First, he had to beat cancer.

Earlier this year, Paul learned he had maxillofacial cancer, which meant weeks of chemotherapy, radiation and proton therapy. During treatments at UC Health Proton Therapy Center in Liberty Township, medical technicians asked what he did for a living and discovered his recordings on Spotify. As a surprise one day, they played over the loudspeakers his 2016 composition, “I, Maximilian.” “When I got off the table, all five of the techs were red-eyed, and wanted to know about the piece,” he said. With his music still soaring, he explained it was about Maximilian Kolbe, a Polish priest who took the place of another prisoner to die at Auschwitz. By now, tears were flowing. Paul was touched that they were moved by his music – “every composer’s dream.” Now, he’s honored to appear in America’s most prestigious concert hall as the music director of the Butler Philharmonic. “Conducting your own music in Carnegie Hall, surrounded by your family after having beaten cancer – it just doesn’t get any better than that,” he said. Paul will conduct his “Music for Mass” with his 40-member Butler Philharmonic Chorus on June 17 at New York’s legendary hall. As for cancer, his motto is to “live an undefeated life.” “That doesn’t mean that you won’t be scored upon – just never beaten,” said the maestro.

This is the story of Jordan Murdoch, a young student from Arkansas who fought against astrocytoma during his final year of pharmacy school. Discover his testimony as a cancer survivor.

“I had just started my final year of pharmacy school when a mass was found through an MRI performed for non-related reasons. In April of 2016, my neurologist decided it was time to remove the tumor before symptoms started presenting themselves. During this time, my focus was to complete pharmacy school, so I took the exams and underwent surgery 7 days later. My biopsy results came in and doctors informed me I had grade II astrocytoma. In November 2016, an MRI revealed a small piece of the original tumor was hiding in the inflammation from the surgery, and I was referred to The University of Texas MD Anderson Cancer Center. A group of doctors discussed my case reviewing my diagnosis, my risks of a second surgery and going straight to radiation. It was decided that my best course of action would be proton therapy. Proton therapy is not offered in Arkansas so I soon learned I would need to relocate to Houston for 6 weeks of treatment. In October of 2017, I entered the MD Anderson Proton Therapy Center to begin my first treatment. It was a very emotional and terrifying day but everyone there was spectacular not to mention the ProtonPals support group. I joined their gatherings and immediately felt comfortable when I heard all their stories. I completed my treatments in November of 2017, returned home and soon began chemotherapy. I am currently doing well, working as a pharmacist and halfway through my chemo treatments. This experience has taught me to embrace life and live it each day to the fullest. I recently completed a 50-mile bike ride. A week later, I completed my first triathlon event finishing first place in my age group. I am leaving next week for a trip to Greece with my girlfriend Emily who has been by my side through this entire journey.

Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping children with cancer overcome life-threatening challenges.

5-YEAR-OLD SENT TO FLORIDA BY NHS FOR PT

Skye Brierley, a 5-year-old girl from Blackpool in the UK, was sent by the NHS to Florida for 31 rounds of proton therapy to treat an inoperable fist-sized rhabdomyosarcoma, a cancer that develops in soft tissue cells.

Skye’s only symptom of her cancer in the lead-up to her diagnosis was tiredness, but her parents assumed it was down to her school nativity. “The school was doing a nativity and there were four performances and all the dress rehearsals, so all the kids were completely worn out,” her mom remembers. She only became concerned when her daughter’s left eye had turned completely inwards, when they woke up on December 23. A doctor’s appointment four days later saw Skye referred to a hospital for a CT scan, which revealed a 6cm x 5cm x 4cm mass between her nose and the back of her skull. Further tests and a biopsy confirmed that Skye was suffering from rhabdomyosarcoma. Doctors allegedly told Skye’s parents weeks later they would be unable to operate on thier daughter without ‘mutilating’ her face. Instead of surgery, Skye has endured 9 rounds of chemotherapy, 3 rounds of radiotherapy and been sent to Florida in March for proton beam therapy. Despite her ordeal, the only thing Skye has really struggled with is losing her hair, according to her mom. “She loves Disney and the princesses and she asks me sometimes ‘will I be pretty again when my hair grows back?’” Since her diagnosis, Skye has had the love and support of her siblings Jordan, 23, Taylor, 20, Kira, 13, and Damien, 9. As well as support from their family, family friends held fundraisers for Skye so they would have enough money for their 8-week stay in the US.

Georgia Mladenovic, a 15-year-old schoolgirl from the UK who is bravely coping with a life-threatening brain tumor, has thanked all the people who helped her and her family travel for groundbreaking treatment in America.

Georgia has just returned from Jacksonville in Florida where she underwent 35 sessions of proton therapy over two months. Although the treatment, the flights and the costs of accommodation for Georgia and her mom were paid for by the NHS, the pair were desperate for the whole family to join them for moral support. In just three months the appeal raised an incredible £13,571 on a gofundme page alone, in addition to other fund-raisers. Her mom Sarah says they would never have been able to make the journey without the generous support of her school, friends and even complete strangers. She also says that Georgia managed her treatments very well with minimal side effects: “She did suffer from nausea and headaches but this was treated with medication provided through the proton center from oncologists at a nearby children’s hospital. They really looked after us at the center.” Now Georgia and her family have to wait to see how the tumor progresses and if the treatment has worked. It could even be a wait of 5 years. In the meantime, she will have MRI scans and follow up appointments to monitor the tumor.

The family of Bodie, a two-year-old who was diagnosed with a brain tumor at the age of 10 months, are trying to raise funds to send her to America for potentially life-saving proton therapy, which will not be funded by the NHS.

Bodie was diagnosed with a brain tumor a few days after Christmas 2016, after 6 trips to the emergency room and family doctor within a 4-week period. She started with symptoms of sickness and constant tiredness which rapidly progressed into her losing the ability to crawl, sit up or even support her own head. “The 6th time we arrived at our local ER a doctor checked the reflexes in her legs and suggested we get an ultrasound of her brain. This revealed ‘an abnormality’ and we were transferred by ambulance to Royal Manchester Children’s Hospital, who then rushed her for an MRI scan and told us the heart-breaking news the next morning that she had a brain tumor big enough to occupy one fifth of her skull,” her parents recall. Bodie’s first surgery was on New Year’s Eve to relieve pressure in her skull and 4 days later she had further brain surgery to remove as much of the tumor as possible. Sadly after 9 hours the neurosurgeons could only manage to safely remove approximately half of the tumor. Two weeks after the surgery Bodie’s parents received the official diagnosis, a grade 3 anaplastic posterior fossa ependymoma. Since then, Bodie has endured 12 months of chemotherapy and had 2 further surgeries in February 2018. The small remainder of the tumor is inoperable, and her parents were hopeful she could get proton therapy on the NHS but her most recent MRI scan has shown a previously unnoticed mass within her brain stem, which means her tumor now exceeds the size requirements for NHS funding by a few millimeters. If you wish to help Bodie get the treatment that she needs, feel free to make a donation on her justgiving page.

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In the search for the best cancer therapy option, “knowledge is power”. Our goal is to help patients and their families by sharing the stories of people that know about Proton Therapy. If you have had experience as a patient, a family member, a caregiver, please share it with our readers. It will give hope. It may save a life. Share if you care.

About Proton Therapy Today

Proton Therapy Today, the online magazine for proton therapy.
Proton Therapy Today is an editorial website which gathers serious, trustworthy stories and information about the “world of proton therapy”.
As the most advanced form of radiation therapy, proton therapy helps limit side effects of cancer treatment and is preferably used to fight cancers seated where side effects are particularly unwanted (brain or prostate cancers, pediatric cancers, etc.) This type of treatment offers patients a more efficient and compassionate way of fighting against cancer.
However, today, proton therapy is only starting out: its accessibility is still low, though growing, which puts it at the center of a lively debate. Many people, patients, physicians, nurses, physicists, researchers, manufacturers are working diligently to develop and make this treatment option accessible to more...